No stomach for cancer

Two years ago, Karen Chelcun Schreiber celebrated her first Thanksgiving without something we all take for granted – a stomach. This November, she and her organization “No Stomach for Cancer” are leading the celebration of the first National Stomach Cancer Awareness Month.

Two years ago, Karen Chelcun Schreiber celebrated her first Thanksgiving following prophylactic stomach removal surgery at Mass General. After testing positive for the CDH1 gene mutation leading to Hereditary Diffuse Gastric Cancer syndrome (HDGC), which can cause “stealth tumors” that infiltrate the stomach lining, Karen knew she would likely develop cancer that would be difficult to detect and treat. She opted for a radical procedure to remove her stomach before the disease could take root. Cancer Center pathologists discovered a handful of pre-cancerous and cancerous cells in her stomach after the procedure; she had acted just in time.

A new normal

Today, Karen is enjoying her “new normal.” She has adjusted to eating smaller, more frequent meals and is even more active than she had been pre-surgery. She is also taking action to spread awareness about HDGC and all stomach cancers, which account for approximately 21,000 new cancer cases each year in the U.S. and more than 10,500 deaths. Karen’s mother and older brother both succumbed to stomach cancer at young ages, alerting the family to the possibility of a genetic link. “HDGC is a fairly new genetic discovery, from 1998,” explains Karen, “and is often unfamiliar to medical practitioners, but if a patient carries the CDH1 gene mutation you’re almost certain to develop cancer, and there’s a 50/50 chance of passing the mutation on to your children.”

Reaching out to help others

Since her surgery, several of Karen’s family members have also tested positive for the CDH1 gene mutation and are working with their doctors to determine whether or not to have the same procedure. Karen’s goal is to reach out to all families who might be affected by HDGC, as well as individuals experiencing the often-misdiagnosed symptoms of stomach cancer. According to Karen, “Unfortunately, there is inadequate knowledge out there about this deadly genetic risk. It’s crucial to spread the message so that people can be proactive about their health.”

That’s where Karen’s organization,No Stomach for Cancer, comes in. Its dual mission is to spread awareness broadly to the public and the physician community, as well as to provide funding for research into stomach cancer prevention, early detection and treatment. A scientific advisory board has been established to guide the organization and includes members of Karen’s Mass General care team – Cancer Center SurgeonSam Yoon, MD; GI Cancer Genetics Program DirectorDaniel Chung, MD; Director of Surgical and Gastrointestinal PathologyGregory Lauwers, MD; and certified Genetic CounselorDevanshi Patel, MS, CGCand other experts from around the world.

One major milestone for Karen andNo Stomach for Canceris their successful campaign to establish this November as the first National Stomach Cancer Awareness Month. They chose the month of Thanksgiving, when much attention is paid to eating and gathering with family. After all, HDGC is a hereditary syndrome, and it iscritical for everyone to be aware of their family history of all conditions. For Karen, Thanksgiving – even without a stomach – holds a more important meaning: she is thankful to be here, thankful to be healthy, and thankful to be able to spread her message of hope.